On Nov 29, 2012, many parents of autistic children were
focused on the U.S. House Oversight and Government
Reform Committee hearing on autism. Legislators expressed disbelief at both the numbers
and the fact that officials had no answers,
despite years of trying to figure out autism. One of those Congressmen there was
U.S. Representative Patrick Meehan from Pennsylvania’s
seventh district.

The following two videos show Meehan questioning
Dr. Alan Guttmacher, head of the National Institute of Child Health and Human Development at NIH
and Dr. Coleen Boyle, director of the National Center on Birth Defects and
Developmental Disabilities (NCBDDD) at CDC.

Patrick Meehan began by saying,“I don’t know of another issue that
has affected more of my constituents, that have demonstrated a greater degree
of frustration than this particular issue.”

Meehan grilled Dr. Boyle about the explosive rise in autism. “Have
you ever seen anything in which there has been such a dramatic progression in
the incidence of diagnosis in a six year period, in your experience with the
CDC?”

Boyle talked about the issue for several minutes without really
giving him an answer..

Meehan tried to get her to tell him “why this
is not a public health crisis” to the CDC.

Boyle stammered about the CDC working hard to keep track of the
numbers.

Meehan then turned to Dr. Guttmacher from NIH and asked about
progress being made in autism. Guttmacher deferred to the Interagency Autism
Coordinating Committee created by Congress to deal with autism and said that
IACC was busy putting together their end-of-the-year update on autism.

Meehan wanted to know who is supposed to be focused on doing
something about autism. Guttmacher pointed to Thomas Insel, head of the IACC.
He also said,“It’s extremely important to NIH” in order to make it clear that people in
public health cares about autism.

Meehan asked about coming up with timelines and accountability and
Guttmacher said that the IACC is already doing that.

According to Guttmacher, the federal governernent is doing a good
job addressing autism but Meehan seemed exasperated and said, “I see it as
being sort of willy nilly---and this is the next thing that gets funded today.”

Guttmacher countered by saying that there are “multiple parties
involved in this who are really quite concerned about this, who work in a
regular way to advance this.”

Meehan sounded frustrated about the fact that “we’ve been at this
issue for so long and there’s such a wide divergence, even in the scientific
definition of where we are.“

Meehan said the IACC “seems to be missing the mark.”

Bob Wright talked about having “a
strategic plan” that coordinates the efforts of the CDC and NIH. Then the
conversation turned to including the Dept of Education and the Dept. of Labor
and the Dept. of Justice in the plan.

Mr. Scott Badesch said that he’s been at
his job as head of the Autism Society of America for a year and a half and he’s
never been contacted by IACC.

Meehan asked Mark Blaxill about genetic research and Mark made it
clear that genetics alone could never explain the epidemic increase in autism.
He went on to describe the ineffective methods used by NIH and the fact
that neither the CDC nor NIH has any accountability when it comes to
research spending.

All in all, it painted a pretty dismal
picture of the state of autism in America. It was interesting to see
legislators incredulous at the failure of health officials have any answers
about what autism is doing to our children.

“’After our recent Congressional hearing on this issue, I remain
concerned that our national approach to addressing the rising rates of autism
is lacking,’ said Meehan. ‘With 1 in 88 children diagnosed
with ASD, we must ensure that we are providing the necessary care and services for
these children and their families. Today we heard from some local advocates and
service organizations that are on the front lines working with those touched by
this issue every day.’

Meehan was asked if he thought NIH and the CDC look at autism as
“a concern or as a crisis.”

Meehan: “No, I don’t believe that there’s the recognition that I
am finding. I have to tell you that I been not just alarmed but almost stunned
by the appreciation of how broad the impact is of autism—the growth that we’ve
seen over the course of the last decade. What had been one in hundreds is now
diagnosed one in 88, one in 54 boys. …The question I asked, Is this
just a health care concern or is it an epidemic?”

Interviewer: “I watched that hearing and I don’t think you got an
answer from them.”

Meehan: “I was not satisfied with the answer. I think what we saw
again was bureaucratic retreat again to ‘Well, we’re doing the best we can.’”

Interviewer: “What can we do?”

Meehan: “There needs to be more of a strategic plan. …Right now
they put people together and they’re sort of collaborating, but nobody [is] in
charge. And I asked that question, ‘When we wake up today, one in 88 children
is being diagnosed, who’s responsible for looking at that?’ And they all
pointed to somebody else. …With something this significant, what I want to see
is somebody who wakes up in the morning and says,‘This is my job.’”

Interviewer: “There is a movement underway…to redefine autism.
…The new DSM 5 by the American Psychiatric Association has autism spectrum
disorder and there are people in the community who are concerned that this will
actually affect how they get educational support, how they get medical support,
what the insurance companies will do. Maybe it’s a clever way of trying to
address that one in 88 number, toget it to be one in 110 again or
something.”

Meehan: “I think that what they will tell you is that it will
create the ability to have more accurate diagnoses and that more children will
actually be recognized in that spectrum. It should help clarify things. One of
the realities I’m seeing is that parents are frustrated with different
reactions from different agencies that have responsibilities. ….Hopefully this
leads to some sort of a simplification, not more ambiguity.”

The interviewer asked about mercury in vaccines.

Meehan: “That’s a question that I’m not prepared to be able to
answer. The experts who are working on this in the health care field are
concerned that it’ll also have an impact in having people not take vaccines. So
education of the right solution is there. The real question related to vaccines
is,‘What role does that play in causation?’ That’s what we need to understand.”

The interviewer brought up the environment and “people who live
closer to freeways…closer to nitrogen dioxide… Is politics getting in the way
of finding an answer to autism?”

The interviewer talked about the young people hitting age 21.

Meehan: “Many of these parents are saying, what happens to my
child after 21? In addition, what happens to my child, after I’m gone?”

All this response from Meehan was very encouraging to parents in
the autism community who mostly feel that all they get from the federal government is lip service
and inaction. I also found two news reports on the meeting held on Dec 10,
2012, I read about Sue Tuckerman, mother of 15 year old autistic twins and a
representative of the Autism Society of America

In one story she was
quoted saying, "The world is not ready for these adults with autism. It's
frightful. We hope that there is some hope for some degree of
self-sufficiency.”

I was able to contact Sue Tuckerman and ask her about the meeting
and about how she thought Rep Meehan was handling this issue. This is what was
discussed.

Q: “Sue, were you surprised by this meeting so soon after the
House Reform Committee autism hearing?"

Sue: “I didn’t really think much about it at the time. I’m pretty busy with the
kids so things slip by, but I have waited over twelve years for something to
happen.”

Q: “During the two hour meeting, what were the biggest concerns
expressed by parents?”

Sue: “The meeting was actually a meeting of professionals. I was
there representing the Philly Chapter of the Autism Society of America. To my
knowledge, the only other parent there was one that worked in the field of
research. I spoke of my troubles with the current system and services or lack
thereof, and mostly about my fear of the future, not just for my two sons but
for our entire family (including my youngest son who does no t have ASD). Many
professionals talked about ‘the broken system or systems’ that simply don’t
work---and especially not together. Families are stuck in the middle, trying to
figure it all out and make the best of a lousy situation.”

Q: “Do you feel that Rep Meehan will be able to wake Washington up to the autism crisis in America?”

Sue: “I think that almost everyone knows someone with autism and
that will help. Rep. Meehan said that the level of frustration that families
have expressed exceeds that of anything else constituents have shared with him.
Meehan seemed to understand that the system(s) are not working and that things
just are not right. I think that he is perplexed by just how disjointed
everything is, just like we all are. He has seen families dealing with
frustration and he wants to help. Meehan did comment that this is an issue that
all POLITICAL parties have an interest in and that there doesn’t seem to
be a divide, which is a big help. I think people are starting to understand
that there is a problem and that there needs to be a leader in this fight.”

Q: “Sue, you were quoted at the meeting saying, ‘The world is not
ready for these adults with autism. It's frightful. We hope that there is some
hope for some degree of self-sufficiency for autistic children who age out of
government funded education programs.’

“Your words point out the reality that when we talk about autism,
we’re always talking about children with autism. That will be changing in the
next few years as tens of thousands of young Americans with autism age out of
school with no place to go. Meehan promised only that ‘improvements to the
funding and services puzzle will come in small victories.’ Will this be enough?”

Sue: “I think it’s a start. As all families with loved ones with
autism know, every little baby step is progress. We do need sweeping change,
but again, we have to start somewhere. I do think that everyone will have to
work together. This is not something that the government can do alone.
It’s not something that families can do alone. We will all need to take a long
hard and honest look at what is going on--- environment, food, how we are
diagnosing, treating, planning, etc. We need to prepare for the future for
those who will be aging out of the educational system as well as make
improvements to the current children’s system. There are many needs in the
autism community and most are urgent.

Q: “What would you like to see Washington do about autism?”

Sue: “We need to look at everything from the cause, treatment
options, what to do now, how do we fix a broken system and how do we fund help
for autism. There is no quick fix but we have to start somewhere. We need to
look at what makes sense.”

Q: “What do you feel was the best part of the discussion with Rep
Meehan?”

Sue: “The fact that the conversation happened in the first place!
That fact that he seemed to be questioning how things could be the way they
are.”

Q: “Will you have ongoing contact with Rep Meehan?”

Sue: “I hope that these dialogues continue. There was nothing
definite set but I suspect there will be.”

I would
ask Rep Meehan to do something else in his home district. I’d like to him visit
a couple of grade schools in his district and talk to veteran teachers. Ask
people who’ve been teaching 30 or more years about what they’ve seen happening
to kids. I’d ask him to think back to when he was a child. How many
children did he know with the behavioral, communication, and learning issues
that are so common today? Did he observe other kids who rock, flap their hands,
were non-verbal, and needed constant care? At the rate we’re going, in another
generation, we won’t remember a world where over one percent of the population
didn’t have autism, including almost two percent of males alone. The big
question will be, how will we pay for all those affected?

Comments

You can follow this conversation by subscribing to the comment feed for this post.

It might really shock the Congress if the Autism Spectrum Disorders were 1 in 10, as I believe is a closer number. Autism Spectrum Disorders are greatly under-diagnosised because so many parents do not want a label. What a stupid thought that we want our child to have a autism label. I have observed parent shying from a diagnosis of ASD for 14 years, feeling bad for the child who has trouble moving forward and so many times is lost without help. It would be nice if our educational systems would develop a plan that would really educate and protect these children...I believe the right help and educational plan might have changed the Adam Lanza's story. His mother can not do it all alone. We need trained teachers and social help for ASD children. So many parents are anxious to have their child "no longer have an autism" label...and the schools are very happy to not have to provide services. It comes down to money, planning, and training.

I think the suggestions made by Jenny for government autism leadership are excellent. I recommend everyone see the recent documentary movie, just nominated for an academy award, called How to Survive a Plague. It shows how taking to the streets worked for the gay community during the AIDS epidemic. Watching old news footage of these government agency hacks is really reminiscent of the autism situation today. These mendacious windbags should really be ashamed of themselves. But I think we have to start making more noise. Like ask everyone affected to send one family member to Washington on one day. Or bring your kid to congress day.

These side-stepping non-answers by Dr. Colleen Boyle and Dr. Alan Guttmacher of the CDC to Congressman Meehan’s questions about the autism epidemic is about the same as the captain telling the passengers of the Titanic, after hitting the iceberg, that he is very concerned and the ship’s crew will continue to watch for icebergs.

As wonderful as it is to read this, I still am pessimistic because I feel that governmental regulatory agencies are use to warding off criticism, never being held accountable. A verbal charge will change nothing. It's all about the money, and until the entire system is changed on accountability for fair research, there will be NO changes. We will ONLY get results by doing what we are doing, which is recovering our children via word of mouth. My kids are recovered, no thanks to the governmental bodies who are suppose to do something about this epidemic. I do praise the American system of free enterprise in medicine which has lead to the abundance of choice which has lead us to have access to recovery methods -- those of us who can afford it. If we didn't have free enterprise here, our clinicians would never have been able to do what works; instead, they would have been stuck following governmental guidelines which have always been less than.

"I have a broken window and a baseball sitting in my living room. Looking outside I see 6 kids with baseball bats. I don’t care who hit the ball, but I want my window fixed and I don’t want any more baseballs coming my way."

Tens of thousands of parents have already learned through personal experience .. "who" is responsible for "breaking the windows" in their lives .. and .. hopefully .. Rep Meehan will eventually begin LISTENING to THEM.

These bureaucrats are amazing at dodging questions. All should be fired!

Dr. Boyle did say however that ADHD has been increasing.
So let's put a priority on looking at the similarities between ADHD and ASD because many kids with ADHD have issues with social interactions. ADHD is really just at one end of the spectrum. We need biomarkers or other ways to link the two.

As for Tom Insel, maybe it is time once again to point out the good doctor and his brother's, Richard Insel's ties to pharma, especially to Eli Lilly.

A quick google search turns up this:
NCATS Teams Up with Eli Lilly (http://www.ncats.nih.gov/research/reengineering/rescue-repurpose/npc/eli-lilly.html):
"How can drug discovery and development be accelerated? One possible answer is to test thousands of medicines for activity against disease pathways not previously considered. The resulting comprehensive information about each medicine could lead to new and different uses for medicines that already exist — much faster than starting from scratch. A new partnership between NCATS and pharmaceutical leader Eli Lilly and Company aims to create this vital public resource.
Former NCATS Acting Director Dr. Thomas R. Insel called the collaboration “exactly the type of partnership that NCATS is eager to foster with many other groups from industry, government and academia.” "

Richard Insel, former developer of the Hib vaccine is now the science head of the JDRF.
He was put into this position without any track record in diabetes research. His appointment interestingly happened shortly after the Classens published data that connected the Hib vaccine to type 1 diabetes. Insulin is big business for Lilly.
Also, Eli Lilly would lose the most from a link between thimerosal and neurodevelopmental diseases or diabetes. Mainstream media should be uncovering these unholy alliances .

From above:
“The interviewer asked about mercury in vaccines.”
Meehan: “That’s a question that I’m not prepared to be able to answer. The experts who are working on this in the health care field are concerned that it’ll also have an impact in having people not take vaccines. So education of the right solution is there. The real question related to vaccines is, ‘What role does that play in causation?’ That’s what we need to understand.”

While I am ecstatic that Rep. Meehan is questioning vaccines in general, I am concerned regarding his reaction to the mercury issue. I respect and understand his position of being “not prepared to be able to answer” that particular question. What troubles me is his comment regarding the “health care experts” concerns regarding vaccination rates. Rep Meehan next comment, “So education of the right solution is there.” seems to indicate that he is buying hook line and sinker that injecting mercury is perfectly safe - if only we could find the “right solution” to convince us doubters.

I would liked to have to seen Rep. Meehan be more curious and read the ridiculous evidence the experts give to support mercury in vaccines, and less concerned about the impact on vaccination rates if Congress were to question it.
I believe as many do that mercury and other heavy metal exposures in all forms are the initial trigger in causing most cases of autism. I also believe that there is pressure on members of Congress from lobbyists representing those many sources. This pressure transcends all political factions and affiliations.

I remember showing the legislators here in Minnesota my son’s urinary porphyrin profile tests showing he was “remarkably mercury toxic”. They all pointed to different routes of exposure such as fish consumption, coal power and air pollutants. I would give the following metaphor to make my point:

I have a broken window and a baseball sitting in my living room. Looking outside I see 6 kids with baseball bats. I don’t care who hit the ball, but I want my window fixed and I don’t want any more baseballs coming my way. I can’t control every mercury or heavy metal exposure, but I knew of one for sure that we could effectively eliminate if we had the will to do so.

Eight years ago the MN Dept of Health convinced our current House Majority Leader Paul Theissen that our mercury legislation was not necessary because mercury would be out of vaccines in a few short years. That never completely happened, and now we even have the AAP fighting to have it put back into some vaccines. We need to find a way to keep Rep. Meehan from falling into the same trap. I trust that if anyone can be convinced to listen, it is Meehan, Posey and many of the others in the hearing room on November 29th.

My older autistic son was "diagnosed" with autism by the special ed screening teacher at our school district after observing his behavior for 30 seconds or so; meanwhile, our pediatrician and child psychologist assured us that he was not autistic (the psychologist recommended that he and his younger brother be allowed to watch videos with lots of talking and singing and they would be all right - we're still waiting for the all right part).

I agree that Insel should be immediately fired also, but that Meehan should first be given a list of folks the autism community had WANTED to be on the IACC panel who were turned down, as well as suggestions on which of those nominees would be good as an Insel replacement.

If Insel is not fired immediately, in the meantime the autism community needs to make their own "shadow" IACC panel, complete with short and long term plans to accomplish the needed changes including true research/treatment/prevention methods based on existing data, effective cross spectrum housing, employment and adult care needs, and necessary funding requirements. That way the panel would be ready to move into place and be immediately effective if the existing IACC gets broken down.

The panel should be tasked with creating a new definition of autism, encompassing common physical comorbidities, with a yearly review of said definition, based on evolving research results.

I think the only stakeholders allowed a place on the panel with a vote should be members of families with autism who have had the responsibility of raising a person with autism and whose financial earnings do not come from the pharmaceutical industry and whose majority of earnings cannot come from a market with direct contracts with pharmaceutical companies. For profit industries would have no place on the panel or ability to make recommendations. Non-profit organizations would only be allowed to provide recommendations by fulfilling certain criteria: 1. No power to vote. 2. Could only provide recommendations if they have administration costs under a certain percentage & individual salaries not to exceed . . . 3. Nobody on their board with financial investments or ties to the pharmaceutical industry or other government organization. 4. A designated minority percentage of their financial support comes from the pharmaceutical industry or pharma individuals not to exceed a specified dollar amount. 5. Their ongoing research funding must show, on an ongoing basis, funds put toward environmental research correlating to the panel's assessment of what percentage of autism is caused by environmental factors, and epigenetic causes and solutions, thereby forcing all autism organizations who want to partake to acknowledge the environmental causes and impacts on autism.

I also think that if the government refuses to move from wasteful to meaningful action and until that happens, legislation should be passed exempting families coping with autism from all federal, state, and local taxes so that they can shift any available income to their own family's needs and they should be given "standard of care" waivers allowing them to seek treatment and care from whatever kind of medical system or provider or consultant they deem effective for their own family's needs, and that if they can show improvement in the dependent during a said time span (yearly?) that the family should be reimbursed within 60 days for the costs of the treatments/support the family chose by either the government, or the insurance company.

All treatment plans evoking improvements of any kind should be recorded by the panel, while ensuring individual privacy rights, and become the next research targets based on number of successes with the most successful reports garnering more funding, and the most immediate funds, with the sole goal of confirming it's success.

At any given time, there would b 5 additional research projects, funded only by publicized "kickstarter" donations from individuals, the ideas for which would be submitted by registered organization members who have shown they are raising/caring for at least one individual with autism, and the ideas would then be voted on by those members.

It should be legislatively mandated that after 2 research study confirmations, the government and insurance companies must cover a designated percentage of the costs of those treatments (75% or more?) should families anywhere on the spectrum seek them even without a "standard of care" waiver."

We should all be very encouraged that Rep. Meehan, by his comments at the hearing as well as subsequent interviews .. is not satisfied by the answers given to questions that thousands of families have been asking the CDC and IACC for at least a decade. Such as:

"Have public health officials ever seen this remarkable acceleration just in diagnosis? Why do public health officials characterize the inexplicable, dramatic increase in autism merely a "public concern" and not a "public health crisis"? Who's in charge of this? Who wakes up in the morning and says "This is my priority"?

#1 .. The IACC representative stated the man "in charge of this" is none other than Dr. Thomas Insell.

#2 .. The IACC representative then stated "If you think the IACC is lacking, it is up to CONGRESS to make the change".

Obviously Rep. Meehan was dissatisfied with these answers .. but .. the question now becomes what should Rep. Meehan do about it going forward?

Here are my humble suggestions:

#1 .. Dr. Insell has been "in charge of this" far too long .. without any evidence of progress .. and .. he should be immediately FIRED.

#2 .. As presently constituted .. the IACC has become more problem than solution. Therefore, Rep. Meehan ought to welcome the IACC's challenge that Congress "do something about their lack of effort" .. by immediately undertaking a serious effort to deconstruct the IACC.